(This was originally written March 1, 2022. I was still struggling to choose a domain name! Still, here is where I was after 4 weeks. I will follow up with my 7-week update in a day or so.)
When someone is diagnosed with gynecological cancer, the standard of care is usually a radical hysterectomy. The definition of ‘radical hysterectomy’ seems to vary a little online. Either it means the removal of the uterus, cervix, and ‘surrounding tissues’ (whatever that specifically means), or it means the removal of those things, plus the fallopian tubes (salpingectomy), ovaries (oophorectomy), and sentinel lymph nodes (lymphadenectomy), plus they also cut off the very top bit (not a lot) of the vaginal canal. Whether a gynecological oncologist defines it one way or another (or doesn’t specify a term at all – mine did not), it’s standard for them to plan to take everything listed in the latter definition. According to the former, I definitely had a radical hysterectomy, but according to the latter, I did not, because I chose to keep my ovaries.
I had actually walked into that examination room already resigned to losing everything and going straight into menopause after surgery. Joy. Bad enough to have major surgery, but then to also have to deal with suddenly full-blown menopause symptoms (which are quite far-reaching, but I was, honestly, primarily thinking of the sexual repercussions). However, the nurse practitioner that met with me before the oncologist joined us told me that my cancer was caught so early that I could probably keep my ovaries, as long as I was willing to have quarterly ultrasounds for a couple years! HELL YES, I was! A small spark of hope lightened the weight on my chest. Keeping my ovaries would be some consolation.
Then, the oncologist walked in talking about menopause, which was jarring, in light of what his nurse practitioner had just told me. The oncologist told me he never recommends that any cancer patient keep their ovaries, because while the risk of occult cancer hiding out there might be low, “it’s a real number, and it’s not zero.” We talked about maybe keeping one, but only if, once he got in there, they looked okay. Okay fine. But I’m a researcher, and I’m always gonna check it out for myself, whatever it is.
Once home, I found at least eight peer-reviewed articles about studies I would have qualified for: women 45 and under with stage 1 endometrial cancer, some of which kept their ovaries, some of which did not (I’ll just cite a meta-study I found from 2017). Regarding 5-year survival rates and/or cancer recurrence, there was no statistically significant difference between the groups. So I told my surgeon about it and I kept both my damn ovaries, because they looked unremarkable (which is a good thing).
Anyway, that’s what happened to me, and what has created my current sexual challenges. On to our main topic!
I can’t do much yet, but my libido seems unchanged, and I can still self-lubricate (yay, ovaries!). I don’t know if the lubrication is quite as much as before (probably not), and I don’t yet know if it will be adequate, but that’s what lube is for, right? Some partners I’ve been with seemed to dislike using lube or thought I didn’t need it when I really did, but I have no problem setting someone straight on that, and I don’t anticipate issues of that nature with my current partner.
Speaking of my partner, about a week after my surgery, I started edging him again (if you don’t know, that’s when you bring someone to the brink of orgasm and then stop, only to start up again…repeatable practically indefinitely). That has been just as fun as it was before, and my enjoyment isn’t less because I can’t receive much. When I’m doing that, it’s about his helpless reactions to my touch and my power over his whole experience. He’s very good about telling me he’s close (in a tortured whine that I especially love), and the involuntary groan of frustration that escapes his lips when I stop makes me giggle. I adore that. And he likes it, too. We kiss deeply when we’re doing this, and he stimulates my nipples, scratches my back, etc. That all still feels lovely and makes me wish I were recovered enough to do more. I touch him everywhere I can reach (while still being held in position on my side with at least 4 pillows supporting me from various angles). Eventually I decide to finish him, and then it’s time for cuddles. Sooo many cuddles. I’m the invalid, but I’m still the ‘big spoon,’ so he snuggles into my arms with his head resting on my shoulder, his face buried contentedly in my chest. We often sleep that way. I have no idea how he breathes.
My restrictions are not to lift more than 5-10 lbs (or use more than that much force to push or pull) for at least the first 6-8 weeks (2-4 to go), and I’m not currently cleared for exercise other than walking. I have to be careful about bending and twisting. Later, depending on how I’m feeling, I can do more, but I have to pay attention to my body and back off when I can tell I’m overdoing it. I have 4 more weeks until I can immerse myself in water (I sooo crave a long, hot bath), and 8 more until I’m allowed to put things in my vagina again. It is suuuuper important that my vag, which now is a dead end, does not literally come apart at the seams before it is healed.
I do not have any restrictions regarding outercourse (I asked, of course!). On Valentine’s Day, I was reading something mildly smutty while my partner was in meetings all day at his lab, and I decided to try playing with my favorite bullet vibrator, just to see what would happen. I was 13 days post-op and horny. It felt very nice, but the sensations didn’t really build, and I didn’t achieve an orgasm. I didn’t even feel close. Vibrators (especially that one) notoriously make me squirt if I’m not careful, but I don’t worry about it if I’m just going to edge myself for a while. I get close and can feel it about to start…and usually I can stop it in time. This time, I never got the feeling I was almost going to come…I merely started to make a mess. That was pretty disconcerting. I didn’t have a pad or towel under me, but I still had a pad on (after surgery, spotting can happen for up to 2-3 months), so I stopped it before I got the bed wet. I haven’t tried again. I am a little afraid to find out that I still can’t come. However, part of my lower lip was totally numb after my surgery (a complication of either general anesthesia or the head-down angled position I was in for nearly 3 hours), and has slowly been getting better over the past month. It’s not totally back yet, but it is getting there. I am hoping there will be improved sensation in other areas as well, eventually.
I read an article on the National Institute of Health website about the effect of hysterecomy on sexual function (being a literature review of 34 peer-reviewed studies that fit their criteria), and the general consensus was that those who had the surgery for benign conditions generally did well, but those who had malignant conditions had a greater chance of dysfunction, due to the greater amount of damage to blood supply, nerves, ligaments, and other connective tissues done during those surgeries (in efforts to ‘get it all’). One main complaint was the absence or loss of intensity of orgasms, and that is something I have seen and heard in personal testimonials online. I don’t know if anything improved for those people, because after one or two updates on the subject, it seems they don’t post about it anymore. Me, I aim to keep posting until I have a definitive answer.
That’s really the reason I’m starting a new blog, to chronicle this journey (physically, mentally, and emotionally) and start a conversation about other people’s experiences with sexually recovering from medical procedures, and also the research that is out there. I am hoping others will participate. I already have a good friend from my undergrad days lined up to write a guest post, when she has time. She had to have a hysterectomy right after she graduated, due to cancer. I never thought to ask her about her sexual health afterwards, and now I am asking.
If anyone reading this now is interested in talking about this subject, I am all ears. I might even want you to make a guest post on my blog, once everything is up and running. I don’t care why you might have had to have a surgery or procedure (including chest-related stuff, because that’s a possible erogenous zone), or what exactly it was, and I don’t care about gender. Every story is valid and interesting. I’m trying to be careful to use neutral language when I am not referring to specific individuals. Everyone is welcome to join the conversation. Maybe you’re just curious, which is also valid. I have learned a lot since my diagnosis, just searching on my own for answers to every question I could think of, and then searching for answers to all the new questions that kept cropping up.
I’m not interested in someone just telling me that sex was ‘fine’ after recovery or that there were ‘no issues.’ I want details. People vary infinitely in their likes and requirements. My mom’s best friend from high school never wanted to have sex again, so for her, no issues at all, best thing she ever did. Some folks don’t find sex to be that big of a deal, and if it feels nice and they feel a connection, that’s the important thing. I still want my mind blown, though, you know? So I want specifics, as descriptive as possible. Like, I can feel my pelvic floor muscles throbbing when I am playing with my partner (or even just holding him), which I feel is a good sign, and as things change or improve, I will be reporting what happens. 🙂 I want to know about challenges, and overcoming those challenges, how long it took, what techniques were tried, how it felt, etc. If nothing helped and it’s been years since the surgery, I want to know that, too.
I have found that it has helped immensely to be able to spend a lot of time with my partner after the surgery. He took care of everything, set alarms on his phone for my meds, made sure I could just concentrate on my recovery. He didn’t even leave me alone for more than a couple of hours at a time during the first week. He made delicious food and jumped up the second I seemed to need anything. He touched me as much as he could without hurting me: lots of hugs, hand holding, kisses on the top of my head, light back rubs. It can be an emotional ordeal, having this surgery (especially when you didn’t want it), and he made me feel loved and desired. Shortly after he brought me from the hospital to his apartment, I noticed that he still got hard when we cuddled, which was definitely a confidence boost! There I was, battered and bruised, drugged up, feeling like hell, barely able to move, and he still wanted me. I haven’t cried after my surgery yet (not counting my responses to books and movies!, which is different), even though I had been crying in the days between my diagnosis and the surgery, on and off. I may still end up feeling low about it again at some point, but I got through the worst of it just fine.
I think all the emotional support and feeling of connection has helped my libido recover quickly. I was surprised how soon I was having fun being slightly evil, swatting at my partner’s ass whenever I could reach it or feeling him up while he was trying to do the dishes. It didn’t matter (and still doesn’t) that I’m bruised and bandaged, unable to move quickly or to do anything to physically dominate my partner. Our relationship is the same. He dotes on me, and does what I ask him to. I do what I can to meet his needs, and I am trying not to feel guilty for relying on him so much right now. He seems to want to do it, and he will be well-rewarded, once I am able. For now, I have bought him a couple new cooking implements, which he has since used to make me food. Ha.
Anyway, I’m not saying that someone can’t get through this on their own, but I am damn glad I don’t have to.
I will update as I feel moved to, and please comment if you have something to say, but keep it kind and topical!
Sources:
Danesh, M., Hamzehgardeshi, Z., Moosazadeh, M., & Shabani-Asrami, F. (2015). The Effect of Hysterectomy on Women’s Sexual Function: a Narrative Review. Medical archives (Sarajevo, Bosnia and Herzegovina), 69(6), 387–392. https://doi.org/10.5455/medarh.2015.69.387-392
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4720466/
(retrieved 01 March 2022)
Gu, H., Li, J., Gu, Y., Tu, H., Zhou, Y., & Liu, J. (2017). Survival impact of ovarian preservation on women with early-stage endometrial cancer: a systematic review and meta-analysis. International Journal of Gynecologic Cancer, 27(1).
https://ijgc.bmj.com/content/27/1/77
(retrieved 01 March 2022)
